After being diagnosed with Chronic Myelogenous Leukemia (CML), Lisa Machado founded The Canadian CML Network; a patient group dedicated to supporting people living with CML. Sept. 22 is World CML Day. (Photo: Lisa Machado)
I was halfway out the door to go shopping for some new clothes for the first time since my one-year-old son had been born, when my husband Kevin pointed out a purple bruise on my forearm.
I hadn't noticed it, and I wasn't concerned. I was an active mother of two young children. An odd bruise wouldn't be that unusual.
Would it?
I took a closer look at the bruise. It was perfectly round, raised, and it didn't hurt. I had never seen a bruise that looked like this. I decided I would stop by a nearby walk-in clinic to get it checked, on my way to the mall.
An hour later, I called my parents to babysit the kids so Kevin and I could go to the emergency department at Women's College Hospital in Toronto.
The walk-in physician had a list of possibilities – hepatitis, a bug bite – but something about the look on her face when she told me I should get bloodwork done as soon as possible made my stomach clench.
Something was wrong.
Related to this story:
(From left to right) Lisa’s husband, Kevin Press; Lisa; and their children, Anthony and Grace. (Photo: Lisa Machado)
Not just a bruise
Thirteen hours later, I was told I had leukemia.
I don't remember much after that, except that the room seemed suddenly really bright, the hospital noises became very loud and I couldn't breathe.
The drive home was quiet, our minds reeling with what this could mean for our sweet little family.
I spent that night walking back and forth between my children's rooms, lying with each of them, listening to them breathe, smelling their hair and wondering if I would live to see them grow up.
The next day, I had my first bone marrow biopsy. As the needle went into my back, I closed my eyes and clutched my daughter's little sock for luck. A few days later, the diagnosis was confirmed: Chronic Myelogenous Leukemia.
Preferring to have access to the latest clinical trials, I was referred to Dr. Jeff Lipton at Princess Margaret Cancer Centre. Empathetic and smart, he patiently answered my questions. I never had a doubt that I was in good hands.
It turned out CML was generally well-managed with daily medication. It was great news.
When Lisa was first diagnosed with CML, she worried about her children and whether she would 'live to see them grow up'. (Photo: Lisa Machado)
Life in remission: Now what?
Thankfully, I responded well to medication and was in remission in a few months.
Now that the crisis had passed, my family and friends seemed to move on, life had gone back to normal, at least for them.
But for me, the hardest part was yet to come.
Dr. Lipton was amazing, spending as much time as I needed to answer my questions and reassure me at every appointment. But I could not shake the awful feeling that things were going to end badly.
I was stuck in a place of anxiety and fear.
After all, how often is someone told that they have cancer in one sentence, and then told that they are probably going to be okay in the next? It was a strange and complicated message.
(From left to right) Top row: Lisa's husband, Kevin Press; Dr. Jeff Lipton, Staff physician at the Princess Margaret. Bottom row: Lisa's son, Anthony, and daughter, Grace; Nancy Pringle, specialized oncology nurse at the Princess Margaret; Lisa Machado. (Photo: Lisa Machado)
'Knowing I wasn't alone was an incredible feeling'
The turning point came when I met two amazing women who also had CML. They shared their experiences and worries, and listened to mine. Knowing that I wasn't alone was an incredible feeling.
Finally, I felt strong enough to move forward.
With the help of Nancy Pringle, a specialized oncology nurse at the Princess Margaret, I reached out to other people living with CML.
What started as occasional meetings quickly grew into regular bi-monthly meetings, and 'Living Well with CML' educational conferences across Canada. This year, our group, the
Canadian CML Network, will be publishing a CML handbook.
World CML Day: A campaign of thanks
On Sept. 22, to mark
World CML Day, we'll be in front of the
Patient and Family Resource Library at the Princess Margaret, offering patients the opportunity to send a free online thank you card to the people who have supported them in their cancer journey.
Click here to check out the World CML Day campaign and video.
Caregivers can also send a card to their loved one, expressing their admiration. Even if you don't have CML in your life, send a card to those who matter. The message on this day will be one of thanks, hope and gratitude for those who make a difference in the lives of people living with cancer.
Dr. Lipton has done more than save my life.
Yes, I have benefited from his medical expertise – he is a renowned knowledge leader in CML. But I have also benefited from the unwavering concern that he has for all of his patients. He really does care. And for many, this has meant a patient experience filled with confidence and hope.
If I had to share some advice with anyone living with cancer, it is this: Find a great health-care provider who not only cares about your physical health, but also your emotional well-being. Then, find a network of people who share your experiences. Family and friends can be great supporters, but no one can truly know what life with cancer is like until they have lived it.
You don't have to face cancer alone.
Written by Lisa Machado, CML patient at Princess Margaret Cancer Centre and Founder of The Canadian CML Network.
